In fall of 1995 I developed chronic hives for a year that all the docs I saw blew off as "stress and unknown origin. Then three years ago I fell apart. I received the DX by 3 different docs that I have FMS and CFS. Nothing is working for me and symptoms are still lingering - I have good days and I have bad days. I have only just started to investigate the possibilities of Lyme Disease from visiting another site. After looking at the symptom list here, I currently have or had all the symptoms BUT TWO listed.
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Last year I had a Lyme test done but all it sad was NON REACTIVE and Quest Labs did the test. I just found out that Igenex is probably the way to go? I was also told of a doctor not too far from me that does treat Lyme and I see he was listed in the sticky at the top of this forum in the Doctor List.

Another thing that I have noticed is that when I take premed antibiotics (amoxicillin) prior to dental work (due to murmur that just developed when my other symptoms developed) is that I often feel much better for a day or two. I also took antibiotics for frequent bladder infections (doxycycline) and felt the same way as when I took the Amoxicillin.

Just wanted to say this seems like a great forum and I hope to get some answers soon. It is very hard living like this when I used to be very athletic and run many miles a day for exercise.

I think I am going to call the doctor I found not far from here and see where we go from there. Is there anything I should ask on the phone when I make that call?

I am sorry you have been sick for so long. I know it is frustrating. I think you should consider Lyme as a possibility. Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. From what I understand, Quest is not a good lab for Lyme testing.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

Where are you located? Which doctor will you be seeing?

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

When you say your PCP treats it, does that mean with ILADS protocols? Many docs say they treat it but they treat for 28 days or 6 months and that is not long enough if you have had it for a while. Also, the dosage and the co-infections need to be considered. I hope your PCP really is Lyme Literate- that would be a real boon!

LLMDs come from all areas. I have seen listed:
Neuros, Internists, Rheum's etc. I think the usual way a doc becomes an LLMD is that they know and love someone who gets Lyme and they learn all about it to help that person becuase they realize that the docs are not going to help.

Best wishes- do reasearch as much as you can. definietly read Dr Burrascano's doc Ticker told you about to see if your PCP follows the protocols.

When you say your PCP treats it, does that mean with ILADS protocols? Many docs say they treat it but they treat for 28 days or 6 months and that is not long enough if you have had it for a while. Also, the dosage and the co-infections need to be considered. I hope your PCP really is Lyme Literate- that would be a real boon!

LLMDs come from all areas. I have seen listed:
Neuros, Internists, Rheum's etc. I think the usual way a doc becomes an LLMD is that they know and love someone who gets Lyme and they learn all about it to help that person becuase they realize that the docs are not going to help.

Best wishes- do reasearch as much as you can. definietly read Dr Burrascano's doc Ticker told you about to see if your PCP follows the protocols.

Sorry if I was not too clear

I have a PCP right now, who is an internist, but I have not discussed this with her. She is not treating me for CFS or FMS (even though she dx'ed me with FMS). I see another doctor for those.

I was wondering if I made an appt with this other doctor (Dr Joseph) in the future (who happens to be an internist too), if he would prefer me to see him as my primary care doctor that treats Lyme too OR if I can just see him for Lyme only and continue to see my regular PCP.